Grassroots programs to encourage minority organ donation prove successful

Since the first organ transplant in 1954, the shortage of organ donors has historically been, and continues to be, the number one problem in transplantation. Organ shortages have been most acute among minorities, especially in the African American population. Organ shortage is an issue because minorities continue to constitute more than half of the patients on the kidney transplant waiting list (African Americans -- 34 percent, Hispanic/Latinos -- 18 percent, Asian -- 8 percent). In addition, it is estimated that each kidney donor provides $135,000 in medical cost savings per patient, a savings of more than $200 million that would be associated with a 35 percent minority donor rate.

An awareness of the scarcity of minority donors was the impetus for a grassroots program at Howard University in Washington, DC. In 1978, a group of 40 individuals were brought together to gain an understanding of why minorities were reluctant to become organ donors. Program leaders uncovered five key obstacles: 1) lack of awareness, 2) religious beliefs and misperceptions, 3) distrust of the medical community, 4) fear of premature death after signing a donor card, and 5) fear of racism. They also learned that face-to-face discussions with culturally sensitive and ethnically similar messengers helped overcome these obstacles.

"This research to uncover obstacles to organ donation helped serve as the basis for a local grassroots program in the Washington, DC area. It has now grown into a national initiative that is funded with $10 million from the National Institutes of Health (NIH) and other sources," said Clive Callender, MD, FACS, a prominent transplantation pioneer and surgeon at Howard University, and founder of the National Minority Organ Tissue Transplant Education Program (MOTTEP).

"We founded MOTTEP, the first program of this type in the country, to increase organ and tissue donations not only among the African American community, but within multiple ethnic minority groups. Since then we have added a disease prevention aspect that focuses on education efforts to decrease the rate of ethnic minority Americans who need organ and tissue transplants in the first place," Callender added.

MOTTEP focuses on overcoming the challenges associated with minority donation by creating an organ and tissue transplant education program that employs the strategies of community participation and direction, face-to-face presentations, collaboration and partnerships, media promotion, information dissemination and evaluation. The national MOTTEP model reaches an average of 700,000 people each year and has been adapted to local MOTTEP site efforts in Honolulu (with a focus on Filipino and Hawaiian Pacific Islander communities), Chicago and Northwest Indiana, the U.S. Virgin Islands, and Detroit.

As part of MOTTEP's disease prevention efforts, pre- and postintervention questionnaires are conducted to evaluate the effectiveness of the program. This evaluation process has also allowed MOTTEP to collect valuable data on the habits of youth participants, such as smoking, drinking, exercise, and healthy eating habits. To date, 6,789 youth participants (ages 12 to 18) have been surveyed on the immediate effects of the intervention. Researchers found that the changes were highly significant for 9 of the 11 (p< 0.01) variables measured, with beliefs about organ and tissue donation, illness prevention to end-stage renal failure, and future plans about organ and tissue donation all seeing positive direction change.